|Hello I'm Frances. I was diagnosed with EGPA in 2013, when I was critically ill. EGPA attacked my heart and my brain and I thought I wouldn't live, let alone get back to the active life I have always pursued. But now, 2 years on, life couldn't be much better!|
|My husband and I met through dinghy racing and it is a lifelong passion of ours. We love being out on the water together. With some small changes, we are back racing competitively on Poole Harbour twice a week.|
|Not content with what I have always done, I have bought a super fast mountain bike, which I love. We regularly charge round the local single track trail and I usually, but not always, stay on! I hope to take my bike further afield next year.|
|We travel frequently to visit family in Australia. Apart from the year I was so very ill, we are back to getting our usual winter sun! We have even planned in some mountain biking during next years trip! Mostly, our holidays are walking adventures anywhere in the beautiful UK from Cornwall to Scotland. I routinely take our dog Jazz for long walks. She and I missed the New Forest during the period when I couldn't drive, but that is well behind me now!|
Most important for me is my amazing family. I am so lucky to have a fantastic relationship with one grandson and a lifetime of memories
still to create with him and his very new cousin.
Things that proved difficult at first were cooking and painting, due to brain damage, which has mainly resolved. We are back eating well again and my art is coming back to me slowly.But when I came out of hospital I couldn't walk (who would have thought. then that I would run 5K a year later, raising money for charity?), read, see properly, use my arms.......So many things that I can't remember.
By adapting where necessary and setting myself realistic goals, I have been able to get back to so much of my life and enriched it by learning new skills.
It's not always easy but EGPA will not beat me.
When you have had time to digest all the changes that have happened to you, there comes a point when you have to take stock of who you are and what you are about. Maybe there are fewer things that have changed than you first thought.
It's certain that you will have travelled to dark spaces deep inside yourself that you didn't want to enter but having been there, you emerged with at least some new perspective on your life, your attitudes, relationships or any number of other things. It's everyones' individual journey.
Then, sooner or later, you will also come to recognise that although your head is in Planet EGPA, you also live on Planet Earth, they co-exist and your friends and family will want you to be mentally grounded in the same place as them. To be 'home'!
No advice can be given to you on how to get 'home' but it might be useful to write down for yourself 'who you were' before EGPA.
What did you stand for? What were your attitudes? What were your life goals? and so on. Maybe you hadn't even thought about these things before, but when you start to write you will find that they are there in the background.
So what changed? You are still the same person, still love the same things. Just because you can no longer do some of those things, doesn't mean you can't be creative and find ways to still participate.
It's going to take some thinking through and it could take years to arrive at a place where you are happy with your new self. In a way you have no choice, your old life is gone and the alternative is to drown yourself in your own sorrows on Planet EGPA. So let's not do that, life is far too short and we need to squeeze every last drop of it out!<< Prev    Next >>